Mycophenolate mofetil

I am taking mycophenolate and have been for 5 months, working great for lupus and managed to reduced pred to 5mg which is a miracle for me, going to keep reducing until I'm off completely. I just wanted to know of anyone else taking it seems to always catch something! Always have sore throat, cold and my ears are blocked! Have taken so many antibiotics since starting mycophenolate. Should this settle down?

Bloods have come back fine apart from lymphocytes borderline too low.

Jo

8 Replies

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  • I haven't, Jo, touch wood. But I'm at 1g per day, so it may be that you're at a higher dose, so immune system suppressed a lot more, leaving you open to infection.

  • Hi purpletop. I am on 2g a day, 1 in the morning and 1 in the evening. I had a blood test done to measure exactly how much is in my body so they can adjust the dose accordingly so will be interesting to get the results back from that. Thank you so much for your reply.

    Got gp appointment in a bit, can't even swallow throats so bad again! The joys hey?

    Jo x

  • Oh my god, thank goodness it's not just me. Was beginning to worry. Only been on it for about 7 weeks and had one lot of antibiotics and getting my second throat problem now :-( what have you been told?? Not due back till August.

  • Hey! Isn't it awful :( been so ill again, only had this sore throat 3 weeks ago and my ears are still blocked from that last cold and sore throat. Went to the gp yesterday who has swabbed my throat and done a blood test as I have only just had antibiotics. Had a blood test done at the hospital on my last visit to measure how much mycophenolate is in my blood, get the results next week, could be the dose is too high. Felt great with the lupus but rubbish with sore throats and virus's! Had my tonsils out years ago and haven't really had a sore throat since. I can't even swallow or eat and drink, so so painful! Starting to worry!

    Hope your throat gets better soon.

    Jo x

  • I have had a couple of viral infections whilst taking mycophenolate for the past 6 weeks. It is not proving to be my wonder drug. My joints and muscles are very painful and unfortunately since my last virus my headaches, jaw/facial pain and blurry vision vision have worsened again ( the MMF was working for them ). I am taking 750mg BD. Methotrexate was definitely better at controlling my symptoms, albeit that it wore off after 5 days. Will be interesting to see what my Rheumy says in 10 days time.

    My bloods are ok, still on pred 7 mg. MMF is definitely a step up in terms of immunosupression. I hope the sore throats etc calm down especially as it is working well for your Lupus.

  • I am sorry to hear that. It does take 3 months to work properly and they might be able to increase your dose so that it helps you.

    I took methotrexate before and found the same thing, also got horrible nausea from it, was great for my joints.

    Always something isn't there? And sometimes hard to work out what is lupus or a virus or infection.

    Good luck with your appointment, hope they can give you some answers.

    Thank you so much

    Jo

  • I'm hopeful the mycophenolate will be affective but so far been do busy going from Essex to kent taking my uncle for chemo and now my mum in hospital in ITU haven't had much time to think about my self. Have just been carrying on. I really hope you start feel better soon. Having regular blood tests done too and now up to 750mg bd. Just don't like the sore throats but if I eventually start to feel better hopefully be worth it. Take care justine x

  • Really hope it works for you and your sore throats settle down. Bless you, sounds like a real busy, hard time for you. All the stress probably isn't helping how you feel either. Hope your mum and uncle will be ok. :(

    Jo x

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